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Medicine has always been a top-down affair. Doctors, drug companies, regulators, and researchers are the expert gate-keepers, telling patients what they need to know. Even their own medical records are locked away to protect their privacy. So what would happen if critically ill patients joined together, obtained their personal information, and made it public?

Just such a real-world experiment is under way at a Web-based social network started by the company PatientsLikeMe. The two-year-old venture has already signed up 23,000 participants in five chronic-illness categories—amyotrophic lateral sclerosis (ALS), Parkinson's disease, HIV/AIDS, multiple sclerosis, and mood disorders.